Man must choose privacy or health

By Emily Richmond (contact)

Monday, Dec. 10, 2001 | 9:45 a.m.

A North Las Vegas man says a pharmaceutical giant wants him to choose between his health and his privacy. It's a choice Grant Gailey, who has hepatitis C, doesn't want to make.

Gailey in May began a 12-month protocol of a promising new treatment for hepatitis C, a chronic liver disease. The treatment, called PEG-Intron, is manufactured by Schering-Plough Corp. and was approved by the Food and Drug Administration in January.

Despite painful side-effects from the treatment, Gailey says the PEG-Intron was working, and his lab tests in September showed the virus was virtually undetectable.

In October Gailey received disturbing news -- Schering-Plough was setting up a database of every patient on PEG-Intron. Gailey was told to give personal information, including the names of his doctor and insurance providers, to a representative of Schering-Plough.

Once the information was provided, Gailey was told, he would receive a special patient registry number that would assure him refills of his prescriptions in the event of a drug shortage.

Schering Plough's promise that the patient information would be kept confidential by a third party didn't convince Gailey. When he refused to comply, he was told his prescriptions couldn't be filled without the registration number.

"I'm going to have to make a decision to either give up my rights or give up the treatment," said Gailey, 49. "I don't know yet what I'm going to do, but I do know that I'm angry and that I'm being bullied."

Louis Ling, attorney for the Nevada Board of Pharmacy, said he was outraged after speaking to Gailey and learning of Schering-Plough's demands.

"The board is investigating all possible avenues of recourse, including legal action," Ling said.

The pharmacy board doesn't have jurisdiction over Schering-Plough, but it does license McKesson Corp., the third-party distributor handling the PEG-Intron patient database, Ling said.

Bob Consalvo, spokesman for Schering-Plough, said Thursday the database is intended to guarantee that a patient's protocol isn't interrupted by short supply. If patients don't comply with the information request, they forfeit the guaranteed product access, Consalvo said.

"We felt the registry was the prudent thing to do," Consalvo said. "There's only so much PEG-Intron we can make, and we don't know how many people will go on the therapy in a particular time frame."

The personal information is being held by McKesson Corp. with numerous "firewalls" to protect patient confidentiality, Consalvo said.

An estimated 4 million people in the United States have hepatitis C, which can be transmitted through intraveneous drug use, exchanging bodily fluids and tattoo needles. There's a stigma to the virus, not unlike HIV and AIDS, said Susan Simon, founder of the nationwide Hepatitis C Association.

Simon, who was diagnosed with hepatitis C in 1991 and is currently on PEG-Intron, said she understands the reluctance of some patients to share personal information with anyone, especially a drug manufacturer. At the same time, Simon said, she would urge patients to weigh the risks to their health against the privacy concerns.

"I have the virus, I want to get rid of it," Simon said. "That's my priority."